Trajectories of Outcome in Neurological Conditions: Quality of Life (Qol) and neurological diseases

Research summary

Quality of Life (QoL) for people with disabling neurological conditions is affected by a range of factors, which have received considerable previous research attention. However, clinicians’ knowledge could be enhanced by two areas of additional enquiry. 1) Wide consultation: a) Interviewing a range of people with the conditions (First stroke, traumatic brain injury, multiple sclerosis, neuromyelitis optica, spinal conditions, motor neurone disease), about factors influencing QoL; b) Multi-disciplinary Panel- patients and clinicians- experienced in the conditions; c) Draft Questionnaire assessed for relevance by people with the conditions. Our earlier work suggested the importance of QoL factors like fatigue. We will utilise suitable previously-validated condition-specific QoL measures. It is possible that unvalidated or little-tested QoL factors will be suggested If so, we will develop a new measure and test using c); d) Focus Groups- patients’ and clinicians’ opinions on QoL factors, and priority factors for analysis. Such analysis would have greater validity than that used previously as it would reflect a wide range of patient and clinician opinion 2) Testing factors for QoL-influence: e) Self-report Questionnaire data from a large Cross-Section of people with the conditions; f) To assess QoL over time, questionnaire participants offered the choice to volunteer to complete the Questionnaire 6 months, 12 months, and 2 years later. Data would be analysed using statistical techniques to determine the nature and strength of relations between different factors. The researchers will develop and test models of factors affecting QoL and compare whether models vary between conditions. The model structure reflects World Health Organisation impairment, activity, and participation areas. The benefit of this approach is that we are testing factors which reflect concerns of people experienced in the conditions, to develop a model which may assist interventions to improve Quality of Life.

Principal Investigator

Phillippa Sharpe

Contact us

Email: dendron@ouh.nhs.uk

IRAS number

88372